Day 281

Day 281

Thurssday, February 27, 2014

Physical:

This was, again, a fairly good day.  There was some confusion, but it did not get to the point of DH getting upset over anything.  He did repeatedly seem to fret about the car … after I told him DSS had the car, late into the evening he kept thinking DSS was coming by to bring the car.It’s  clearly no use trying to tell him anything different, because he simply isn’t able to believe anything but whatever fantasy he is in at any given time.

He slept later than I had thought he would because of waiting for the nurse.  He dozed off and on, and by 8:00 was barely holding his eyes open.  He didn’t eat well at all, only one pot pie; and refused anything else.  But at least he did drink 2 glasses of his protein drink.

He slept all night with little coughing, though he wheezed and his breathing sounded “labored”.  It’s too bad he gets woke up so early in the morning; this morning (Friday) he’s having a hard time getting back to sleep (still fretting about the car .. though I actually have NO idea what car it is he is so concerned about).

People:

We had a busier day than anticipated.  The CAN came early as expected.  But it was nearly 1:00 until the nurse came.  DH was content to stay in bed and sleep until she came; but that shortened my “work time”.  (as it turned out, it didn’t matter).  Late in the afternoon the social worker came by, and she ended up staying over an hour.  DH slept off and on while she was here, but we had a really nice visit..

Emotions:

I’m border line weepy this morning, but it’s really only a physical reaction.  I didn’t sleep enough after around 4:00, mostly (I think) because I couldn’t get warm.  Or else was too warm.  Or couldn’t get comfortable.  It was just an “off” morning.  So now I’m very dopey.  I’m also very achy all over .. and I know that’s from the furniture moving I got done yesterday.  I didn’t finish what I need to have done before tomorrow; but hopefully I can finish this afternoon.  I hope to get the bedroom ready for moving things that I need help with.  DSS *said* he’d come by with the trailer and get the desk … so hopefully he’ll show up tonight since he hasn’t yet.    He’s also supposed to bring the hand truck (that is technically mine but they borrowed it last spring and I can’t get it back).  That would have made yesterday and today’s work easier, but I’ll just have to manage just like I always have.

Without exception everyone I’ve talked to about the room changing I’m working on has agreed that it is a good thing to do.  I did have one person express concorn because patients with dementia don’t like changes.  (this was a person who’s opinion I value).  I asked the nurse about that, and she said it is true in the beginning stages.  DH is past that.  And truthfully, he often doesn’t even know where he is anyway.  He used to point out things in the room and say he had something “just like that at home”.  He hasn’t even done that lately. My concern is that he often thinks he’s somewhere else .. like in a car, in a warehouse.  Once he was even at Wal-Mart, which was very odd because he’s always hated going to Wal-Mart.  Recently more than once when I take him from the bedroom to the living room he’ll say he didn’t realize we lived so close to wherever it was he thought he was to begin with.  So if we’re not even leaving the room, I don’t know how much more he’ll be confused.  And I feel a little guilty, like I’m “banishing” him.  And het, it really is a safety thing.

I think this is going to be a difficult day.  He’s awake way too early, and calling me (actually, he’s calling “mama”). He’s obsessed with getting whatever car he thinks it is back from DSS.   He really is driving me crazy, and I’m not sure what to do.  Playing along doesn’t help, because he won’t accept any excuses I give him.  Telling him the truth doesn’t help because he *knows* what’s “true” and he gets angry with me fro trying to tell him otherwise.  I’m afraid of this being one of those days where he refuses to let me put him in the lift chair because he’s convinced either DSS will be here any time with the car (that he thinks he’s going to get in and drive somewhere). 

He’s been “good” for a long time.  I really don’t know how to deal with him when he gets in one of these spells.  No matter what I try to say to him, he comes back with something else that makes no sense (to me at least).  And even though I know if he gets up this early it will be much too long a day and he’ll be over tired .. he seems to be bound and determined to get up and go deal with that car.

I think this is going to be a very long day!

Day 280

Day 280
Wednesday, February 26, 2014
Physical: 
As far as getting up and down, the day went somewhat like they have been lately.  DH slept until about 11:00.  He said he wanted to sleep more .. but not 5 minutes later he had tossed the covers off and said he was getting up.  He insisted on holding onto one of the blue pads (tried to hold it out of my reach) because, apparently, he thought I wasn’t going to find him any clothes.  That should have been a clue how the day would go!
Mentally, he was a little more confused than normal.  He went back and forth from calling me “mama” all day.  He got it in his head he had left the car at his mama’s house and it wasn’t safe there.; kept insisting I call mama to let her know he was staying at “my house”.  He finally let it go when I told him DSS would get the car and take it to his house.  Somehow, that made sense to him.
He ended up going to bed a little earlier, because he thought he needed to use the bathroom.  He didn’t.  But he fell asleep anyway.
He ate 2 of the chicken tortillas again tonight.  And, I got him to drink 2 of his protein drinks.  
Several times during the day he insisted he could get up and walk.  I can’t even tell if his mind really is that far gone, that he doesn’t know he can’t … or if there’s just some stubbornness going on.  It’s just scary, because I can’t watch him every single minute and I’m always afraid he’ll get hurt trying to get up.  I need a seat belt for his chair!
People:
The CAN came early.  That was all.
Emotions:
Last night (Wednesday) was a bit rough.  He went through a spell of thinking I was his mama again.  And then he was fretting about where he parked the car.  We also went through the daily round of “I’m going to get up” and me trying to explain why he couldn’t.  It’s sad, and some days I’m OK .. other days I get crying spells.  Last night I was pretty tired from moving stuff around in his room (and he hasn’t even noticed the changes, which is a good thing).
I have a friend I’ve known for nearly 50 years.  Sometimes we can go literally years without being in touch.  Right now we’re in a phase of writing 2 or 3 times a day.  That is actually helping a lot .. sort of doesn’t feel so “alone”.  She used to work as a nurse in a rest home, so she understands a lot of my frustration.  And, it’s just nice to be able to say what I feel without being afraid of stomping on toes!!  I do pretty much say what I want here .. that’s the whole point … but occasionally someone misunderstands something I say and gets offended.  I’m sorry about that;  I wish people would just realize that I’m going through a difficult time and need this outlet, and nothing I say is meant to hurt anyone’s feelings.  
The CAN is here now and the nurse will likely be here before the CAN even leaves.  Then I’ll have the rest of the day, hopefully, to get more stuff done on the “great bedroom project”!

Day 279

Day 279

Tuesday, February 25, 2014

Physical:

Because of it being clinic day, it was not a “normal” day.  Because the CAN didn’t come as expected, DH got to sleep longer.  I’m sure that helped, some at least.  We got to clinic on time, but they were running late so we had a bit of a wait.  And, it always takes at least an hour by the time everyone has to come in and talk to us. It gets a bit annoying, since they all pretty much say the same thing.  The doctor – the whole “point” of the visit – was in there barely 3 minutes; although that was long enough to verify that I can stop one more pill.

As soon as we got home, DH was more than ready to lay down.  Not long after we got home, the nurse/administrator got there.  It turned out we had met her last summer (I just hadn’t made the connection with the name).  She was only here a short time, just long enough to officially confirm that he is still eligible and remains on hospice care.  The CAN called, but by then DH was resting and I saw no point in disturbing him.

I got him up about 5:00, as I was afraid if he didn’t have some “up” time he’d not sleep all night.  That also gave me a chance to get dialysis set up, and work in the room a few more minutes.

He ate 2 pork chop sandwiches.  Starting today (Wednesday) I will try to give him 2 protein drinks a day,.  The one thing they (clinic) continue to harp on is his low protein level.

He’s been bathed this morning, and is sleeping.  I don’t know how late he’ll want to sleep today.

People:

DSS got here and took us to and from the clinic.  He still refuses to go back with us to see the doctor. 

As mentioned above, the nurse came.

Emotions:

I feel sleepy this morning; but I slept OK.  I think it might just be because it’s cold and gray again.  They say it will be sunny by afternoon.  It’s still depressing when DH is so confused, but I guess I’m getting more used to it.  This morning I told him the CAN was here, and he seemed fine .. and then asked me “how did I get here?
.  I’m still a little afraid that not taking him out of his room might increase the confusion.  But, it really is a safety issue.  It looks like the “big change” will happen this weekend.  I’m surprised at so soon, but really the sooner the better.  And most of the time DH seems to understand what’s going on.  At least, whenever we do a transfer in and out of the wheelchair he does grasp how hard it is.  I’m not always sure how much he does really understand.  He mixes things u a lot. 

I think perhaps I’m handling things better for several reasons:  (1) I am, somewhat, adjusting to what’s going on with DH; (2) I do better it seems with specific goals in mind, such as getting furniture changed around to make things safer with how I have to deal with DH; and (3), I’m looking forward to time with family as well as *warm and fuzzy* that they offered to help with the project. 

Having a specific deadline is helping too .. I pretty much know what I need to get done ahead of time so that there’s no obstructions to the parts I need help with.

Also, DSS is willing to not only take a desk out of the way, but also help box up supplies (there are a lot of potentially sharp things that I can’t see well enough to try to handle safely).  He doesn’t want to take the gun cabinets yet .. but I do understand his reasoning.  And I’ve figured out a way to move things so that they are even less accessible than they are now (plus the fact that all ammunition is in a completely different place that DH cannot get to, and no one else knows where it is).  His guns have always been very important to DH, so I can see that taking them completely away might set him into a depression .. or get him all upset thinking they’ve been stolen. 

DSS said he will come by one evening before Saturday, and bring the trailer.  So, I need to be ready for that too.  But for now DH is sleeping soundly, and I won’t disturb him.  I’ll have to skip my afternoon nap instead! J

Day 278

Day 278

Monrday, February 24, 2014

(Note: not at all sure what day I posted this morning, but it was *supposed* to be for SUNday!!)

Physical:

This was a bit of an odd day.  Apparently all of the different hours caught up with DH; or else he just felt bad (but never said so).  He slept until 3:00.  He woke up from time to time, but said he still felt sleepy and didn’t want to get up.  Even after he did, he dozed off and on in his chair.  And at bedtime he went right on to sleep.

He slept “restless”, and is groggy this morning; but not wanting to get up.

I fixed a chicken recipe (a very good one, passed along in my family), he ate 2 good sized servings.

He was very disoriented (from so much sleep?).  An insurance man came by, and he had to sign for a policy.  He tried to tell the man he had a “previous” address on the form (it was where we are now!).  Later, he repeatedly insisted that I call his mama because she had some information about an insurance policy for him!  I didn’t see any particular advantage in telling him his mama has been gone over 20 years; so I just told him I’d do the best I could.

People:

The CAN came early.  As said above, an insurance man came in the afternoon.

Emotions:

A lot of sad.  And some frustration this morning.  I thought since the CAN comes so early, this one time he’d be all cleaned up for his appointment.  I got up early to shower and dress … and then she called.  A problem came up, so she won’t be here (just this one day of course) until around 2:00.  And,  the hospice MD (or PA or something, who ever it is that took over his care from the Duke doctor) is coming this afternoon, also around 2:00.  Usually he sleeps all afternoon after clinic .. not today!

My plan to turn his room into a sitting room .. and eliminate a large percentage of using the wheelchair .. has gone into fast forward.    The sooner the better; but I sure do have to hustle to get the “excess clutter” cleaned up and either boxed up or thrown away.  I won’t be able to do much, if anything, today.  But at least I have already made a bit of progress.

Day 276

Day 276

Moturday, February 23, 2014

Physical:
It was again a fairly “calm” day, at least for a Sunday.  DH slept (though not completely quietly) until about 11:00.   It was good to go on and get him up, and the afternoon started a little earlier than usual.  I don’t know if he slept during the afternoon or not; but he didn’t in the evening after I was home.  By 8:00 he was very ready to go to bed.

He never ate any lunch (except some chips), but ate a good bit of a hamburger concoction for supper.

People:

TGF and the boys got here before 1:00.  The boys were going to visit “another grandmother” so were ecited and ready for a change.  They had to take the 2 weeks worth of trash to the ruck first!  DH and TGF’s oldest boy stayed with DH during the afternoon.  They all left early, again, before supper.

Emotons:

DH did wake around 5:00 wanting to get up to go home.  I got him settled, and he went back to sleep.  I didn’t.  I tried to get another hour nap .. but I was too awake.  I sit there and my mind starts whirling and next thing I know I’m getting weepy again.  I think I invent issues that don’t exist; or else I get all worked up about something .. and usually, once I get past the initial emotional response, I can figure out a solution.  Anyway, when it registered I was starting to get a bit *down*, I decided to go on and get up. 

I’m still not at all liking that the CAN comes so very early, but I’m trying to deal with it.  The worst of it is that it gets DH awake and hard to get him to settle down and sleep longer.  If I get him up that early, it makes the day way too long for him.  I know it sounds like I’m being mean; but I simply cannot get him up and down multiple times a day.

The room conversion will make it easier in that I can skip getting him in and out of a wheelchair (which isn’t really very “stable”).  I’m concerned though, that he won’t know where he is.  Frequently when I take him to the living room he will say he didn’t know we were “that close” to where ever it was he thought he was in the bedroom.  I’m hoping just the act of getting him out of bed and into his chair will be enough.  Eventually it may not be, but I have to do what I can for now and deal with whatever comes next when it happens.

The CAN is here.  I guess this day has well and truly started.

Day 275

Day 275

Saturday, February 22, 2014

Physical:

After a bit of a strange week, this was back to a closer to “normal” day .. or at least, the way things tend to run more smoothly.  DH slept until just before 11:00.  He managed to stay mostly awake until mid afternoon – which was pretty good for him considering TV was pretty boring.  He did take a nap for a couple of hours, and then I didn’t have to struggle to get him to wake up.

He ate a sandwich for lunch, but didn’t eat as much supper as I thought he might.  He loves pork chops; but I think maybe they’re getting harder for him to digest.  I don’t know what direction to go … we can’t eat only chicken all the time!  The things he likes the most are the ones he has the most trouble with .. either chewing or digesting.  I don’t think he’s ready for *much*!

Once he got to sleep he slept through the night; but his breathing sounded labored most of it.  I had to wake him up for a pill, but he seems to be sleeping easier right now.

People:

We neither saw nor heard from anyone this day.

Emotions:

Even though I started the day a bit weepy, I managed to stay busy enough to feel productive.  I got one area (about 3’ of wall space) cleaned and reduced to 2 smallish boxes (still haven’t brought plastic bins down to put stuff in).  I didn’t throw out anything “good”, even if I didn’t know what it was good for; but good grief, there was one box full of just crumpled paper towels!  And I did toss some seriously out of date road maps!

I also was able to rearrange a few bits and pieces to make the supplies more organized and easier to reach and maintain.  I think.  I will probably have to rethink some of that when it’s time to actually change the furniture; but it will be fine for now.  There’s still a lot of stuff to sort .. DH is the worst pack-rat ever! I find I don’t mind being tired when I’ve been productive.  And I’m able to be productive without straining my back or making my knees ache.

I slept better last night than I have all week .. even though I moved during the night.  Just after 2:00 a barking dog woke me, so I went to another room – and slept well the rest of the night.  Finally!  I still don’t know why I sometimes have so much trouble sleeping; it’s not like I’m not tired.  I can hardly hold my eyes open, and almost never get to watch 10:00 shows that I want to see.  But I wake up after only a few hours – sometimes only 2 hours – and then have a hard time getting back to sleep, even though I’m tired and feel sleepy. 

Today will be the first time in 3 weeks to get to the grocery store.  Too bad it’s the end of the month .. not the time to “stock up”.    And I won’t get anything else done in DH’s room, unless DSS turns out to be willing to help with the desk … he could maybe start boxing up the things on it that need to go with the desk, and putting aside (for me to box) the things to stay here.  We all know he’s never going to use any of that stuff again (mainly a lot of miniature tools for making scale model boats).  But there’s no need to upset him by just giving away all of his stuff and telling him he can’t use it!   The worse he gets the more I feel like he needs to have hope.  If he didn’t have the dementia, I think he would be very depressed, but realistic.  As it is, he doesn’t know where he is most of the time; and doesn’t know “when” it is a lot.   And except when I argue with him, or deny him what he wants, he’s not in general upset.  He does have occasional flashes of lucidity when it bothers him to realize his mind is so far gone; but fortunately, they don’t last.  A lot of the time he seems content, because he’s frequently telling me (and others) places he went, things he did.  To him it’s all very real.

At times I wonder about my own motives in moving things around, getting rid of stuff.  Am I just being lazy, wanting to confine him to one room?  It’s going to make the rest of the house seem that much emptier.  But the fact is, it’s getting harder and harder to have to get him in and out of the wheelchair.  It’s not “stable”,  and doesn’t take much for it to move and risk a bad fall.  I’m trying to look at it as not so much “confining” him, as a way to eliminate a dangerous step.  I think he can be up and down more often if it is only a transfer from bed to chair.  I know myself, I’ll get annoyed at that too; but as long as I can do it safely I won’t refuse.  But if he’s stuck in only one room, it’s only logical to make that room more inviting, and open so anyone that comes here .. even if it’s only DSS on Sunday afternoon … can be in there with him to visit.  As far as getting rid of stff  … that’s tricky.  DSS sees me as “jumping the gun”  … wait until his dad is gone before getting rid of his things.  I see it as getting rid of junk I’ve wanted to get rid of for years!!!  I mean really, he’s saved ever little scrap of rope, tiny pieces of wire, old lamp cords, bits and pieces of leather too small for any project, and so on.  Tools are one thing (even if I do know he’ll never use them); large blocks of wood and other such supplies are OK.  Just not all the giblets and scraps!

Day 274

Day 274

Friday, February 21, 2014

Physical:

This was a little bit better day.  DH stayed in bed until close to noon.  He was awakewhen he got washed up, but was persuaded to stay put since the dialysis nurse was coming later.  After that, he went back to sleep.

Once up, he dozed a lot in his chair.  At one point he wanted me to help him get up .. said he wanted to lay down on the sofa!  I convinced him to settle for laying the chair back.  He wasn’t happy, but didn’t argue; but then he did say he “didn’t hurt”.  Since he’d never said anything about hurting to start with, I’m not sure what he meant (and he couldn’t tell me).  I tried to give him some lunch, but he refused to eat; but then I fixed supper a little earlier, and he ate a (small) 2^nd helping of spaghetti. 

By 8:00 he was ready for bed as normal, and went on to sleep.  He slept all night, but at times his breathing sounded labored .. he sounds very congested.  Early in the morning I went in and put on an extra blanket, and he seemed to *settle* a bit so maybe he was on the edge of too cool.  He’s usually OK in the day, but at night wants a lot of covers.

It’s still too early for him to be up (though on a week day the CAN would be here now); but he got a coughing spell that seems to have gotten him awake.  I’m hoping he’ll go on back to sleep .. there’s just no point in getting him up too early and then he just sleeps in his chair.  If he sleeps in bed longer, he tends to be awake more of the afternoon.

People:

The CAN came early per the new schedule that I’m very unhappy with.  But since DH didn’t insist on getting right up, it was OK.  The dialysis nurse came around mid morning to draw blood for next week’s appointment.

Late last night DSS called to see how things are going and ask about my weekend.

Emotions:

I didn’t sleep well, and have absolutely no idea why.  I tried to just stay in my chair anyway; but I couldn’t “turn my mind off”, and started getting very weepy  I got on up, and found a few things to do.  Now I’m headachy – probably from not enough sleep; but I also feel like my eyes are getting inflamed again.

I don’t much like Saturdays any more.  The majority of the time anyone that comes here does it on week days.  The hospice people don’t work weekends (well, some do, but not “our team”).  Even TV is boring. 

I think I will try to see if I can doze for an hour, then take DH pills, then get a shower.  Since changing his room around is going to be a project (which I’ve been offered help with, and I am ecstatically grateful for that!), while he’s up during the afternoon I will try to start sorting some of the random *stuff* that needs to be eliminated.  I mentioned the idea to him last night .. when, once again, getting him into the wheelchair was difficult .. and he seemed OK with it.  At the time he was understanding my point about not having to use the wheelchair so often.  I know he’ll forget and I’ll have to explain more than once.  My only fear is that he’ll feel “banished” to the one room.  I’ll just have to try to get him to understand (as much as he’s able) that this plan is a good alternative to him having to be completely bed-bound.  I will have to relocate the monitors so I can hear him if he needs something, and not just hear the TV.  There’s a lot of furniture moving involved, but I do think this will be a better plan.  At least, I hope so.  The whole point is to only have to move him from bed to lift chair, and skip the wheelchair step that is getting increasingly dangerous.  But it would be totally mean to just put the lift chair in his room and leave it like it is, so he really would be abandoned  Some of the people that at one time came to see him have pretty much stopped coming by.  It almost feels like they all thought he was worse off than apparently he is; and since he’s not on his death-bed, they don’t bother to come visit so much now.   But Sundays can be the same, just in a different room (DSS can just lay on the sofa and choose what they watch, and DH will be fine with that).

Anyway.  A lot of stuff needs to come out of that room, so perhaps today I can start on it.

Day 273

Day 273

Thursday, February 20, 2014

Physical:

It was a strange day.  Instead of going back to sleep after a bath, DH wakes up.  This is throwing everything off kilter; but I think I’m going to have to be a lot firmer about just not getting him up.  Thursday he wanted up by 10:00 or so.  That doesn’t sound “early”, but it is for him.  Once I got him up and in his chair, he took his pills .. and then went right on back to sleep for several more hours.  He woke enough to eat a few Cheetoes, and went in and out of sleep for the next few hours.  By 6:00 he was trying to get up, and it was all I could do to persuade him to wait to eat some supper (didn’t eat much) and let me finish getting dialysis set up.

By 7:00 he was ready to go to bed; and before the first “Big Bang” was over he was snoring.  But he was restless several times, and awake by 5:00.  At that time he was trying his best to get up .. said he had to go apply for a job.  It took me a long time to get him to settle and go back to sleep.  I, of course, didnd’t.

People:

The CAN gets here about 7:30 now.  I’m not at all happy about this; but it is not my place to demand that she change her schedule (making it more difficult for her to get to all the places she needs to go) when we’re not even paying for her services.  So, I’m trying very hard to adapt .. and so far, failing miserably.  The nurse got here before the CAN left, and both were gone by around 9:30.  After they were gone is when he wanted to get up.

The chaplain came by about 12:45 or so.  DH greeted him, and said goodbye when he left.  In between, he snored during the entire visit! 

Emotions:

I’m not doing a very good job of adapting to this new schedule.  I think part of the problem might be that I don’t sleep well because I’m subconsciously afraid I won’t wake up early enough.  I have a battery alarm clock; but it is the most annoying thing in the world to try to set.  I got so mad I threw it across the room.  (the next day the salarm – at the wrong time – went off as usual!).  I tried an electric clock, but it has a loud “buzz” that I just couldn’t tolerate.  This morning I didn’t need to worry .. he was awake by 5:00 and I didn’t go back to sleep.

By the time the CAN got here, I was on the edge of tears with frustration.  But I refused to get him up, and he did go back to sleep.  The dialysis nurse should be here within the next hour; and after he goes, I’ll have to decide if it’s time to get him up or not.

I’ve been rethinking the sort of plan I have for changing his room around.  I want to turn it into a sort of sitting room, with the goal being only having to move him from bed to chair; and anyone who comes can visit in his room.  One idea I had was to put the short sofa at an angle in one corner (leaving a nice little gap of storage space).  But this morning I realized that the heat vent is too near the corner for the sofa to fit.  To do it in reverse would mean moving 3 2-door cabinets packed full of his *stuff*.  I don’t know if I can face that or not (but maybe I can find one of those kits that help you move heavy stuff).  The goal, of course is to eliminate the in and out of the wheelchair part.  To and from the bed and lift chair are  heavy and safer for transfers.  But, I can’t do any of it without help, so have to wait until someone else has time to be bothered.  I suspect DSS won’t be part of that, because he’s already been very  negative about moving any of his dad’s things (and I REALLY want him to take the gun cabinets and the desk to his house). 

A period of severe storms is predicted for today.  They say around “lunch time”;  but the wind is picking up already (10:00).  We’re not under any warnings .. seems to be north of us; but that could only mean we’ll get it later than the counties north of here.  Or nothing might happen; but the air feels “heavy” .. I feel on edge.  Even though I know it’s partly because I’m tired and cranky this morning, I still feel like I’ll settle better once the whole line of storms has moved on out to sea.

I also think DH is not feeling well.  He’s been complaining about having a cold for a long time.  He’s congested; and the nurse did notice some upper airway congestion (but lungs seemed clear still).  This morning when I took him pills, he complained that his throat felt on fire.

Now there’s a “tornado watch”.  What a month!!  Only February, and we’ve had a highly unusual amount of snow .. plus temps near 80s .. strong thunder storms .. and now possible tornados.  I want to bury my head in the sand.

And sleep.

Day 272

Day 272

Wednesday, February 19, 2014

Physical:

This was not an easy day.  It seems the change in schedule has DH off kilter too. He did not get up right after having his bath; but he was ready to get up much earlier than usual.  Then he immediately went to sleep in his chair.  He woke up around noonish, but refused his protein drink then.  He insisted he had to go to the bathroom.  We had another go round of “geriatric 50 first dates”, with me explaining that the message to “stand up and walk” just doesn’t reach his legs.  This time he refused to believe me; and we ended up with a near disaster before he finally allowed me to get him into the wheelchair.  Then he decided to just lay on the bed until “something happens”.   He’s having a very hard time telling if he really needs to “go” or not.  He ended up napping for over 3 hours.

I got him up by 5:30 – which, of course, threw my evening schedule out of balance too.  But he drank his drink, took his pills, and also ate 2 pot pies for supper.  And by 8:00 he was ready to go back to bed.

Unfortunately, this morning he’s awake too early (waiting for his bath), wanting to “get off this table”.

People:

With the CAN coming so very early, it makes for a very long day. In the evening I did get to talk to my brother, which was nice.

Emotions:

I’m trying to push myself to adjust to a new routine, but I’m really not good at it.  It takes me awhile to get settled, and I don’t do well with disruptions.  But, that’s my own problem and I have to find a way to solve it.

DH has been “odd” the last few days, and I suspect he’s also having to adjust.  I don’t know how much he’s aware of things changing; but he does know the CAN comes much earlier now.  It seems like instead of relaxing him so he’ll go back to sleep (as should be his normal), apparently the bath wakes him up.  I really cannot handle getting him up and down multiple times a day, but he just can’t grasp that.  Well, he can’t even grasp that he can’t do it himself. 

I’m starting out the day with my back achy.  I think perhaps the changes I have in mind for his room may be tackled over spring break, rather than wait for summer.  It’s not something I can do by myself.  I really need DSS to take a few things to his house; but he is resisting making changes.  I know it’s partly because he sees it as too permanent (as if he’s waiting for his dad to get better).   Or maybe he just sees it as me getting rid of things while his dad is still here.  What I need to do is make more space in his room to accommodate all the various medical equipment, and still have it comfortable for him to be in there and have visitors in the room with him.

This morning (Thursday), CAN here by 7:30, and DH told her he wanted to get up as soon as possible.  I am so frustrated; I can NOT get him up and down multiple times.  But he is in one of those *moods* (not really a mood but don’t know what else to call it) that he wants to go home.  I have no idea where he thinks he is, but he is very determined to leave.  Obviously that’s not going to happen.  I do hope this doesn’t turn into one of those days where he gets obstinate about it (like once before he refused to even get out of the wheelchair because he was waiting to be taken home).  I expect the nurse some time this morning .. I have no idea how she’ll react if he’s in that kind of mood.  I know she’ll tell me it’s “normal” or “to be expected”; but what am I supposed to do????

Getting up so early (by 6:00 this morning so I had time to shower) is not sitting well.  I used to have morning for getting stuff done, and computer time.  Now it’s all messed up, and I haven’t yet figured out how to adjust.

Day 271

Day 271

Tuesday, February 18, 2014

Physical:

The day was, in general, a good day.  DH slept late, and the CAN came fairly early.  He stayed in his chair after that until his “normal” bedtime.  He did nap a lot of the afternoon, but it didn’t stop him from sleeping most of the night.

Everything changes today, so it will be wait and see how things work out.

People:

The CAN came before noon.  TGF stopped by to bring the refills she picked up.  I also got to hold one of the tiny babies (her nephew) briefly; but he was hungry and angry about it, so she had to get home with him.

This morning (Wednesday) the CAN has already come and gone.

Emotions:

I’m very weepy this morning, but it is not DH’s fault.  I think it’s at least partly a version of “holiday blues” .. sort of that after vacation slump.  I know it will be a long time before it happens again (it took  close to 6 months to organize last weekend!).  For one thing, there are lots of things coming up in the spring that will tie up weekends for everyone.  But there’s also the slight issue that I feel a bit guilty for taking off.    Or maybe it’s not so much “guilty” as resentful that someone else thinks I should feel guilty.  It’s so hard to explain.  But it feels like now that DH and I are old, and have health issues, I get the feeling that *some people* think we deserve it because *they* don’t have what they want in life.  The fact that we went through it all … struggling, raising a blended family, health issues .. apparently is irrelevant.  It feels like they don’t think we’ve earned any respite in our old age.

I’m really over tired this morning.  And as I said it’s not DH’s fault; but I am not sure ow this day will go.  Powerful thunder storms woke me up just after 4:00 AM.  It poured rain and just when I thought it must be letting up – it rained harder.  There was massive amounts of thunder and lightening.  It went on for over 2 hours before it quieted down.  And just when I had drifted back to sleep, there was one last super loud crack of thunder.  By then it was so near 7:00 I had to go on and get up.

And that brings me to another issue.  It’s not one I can blame on anyone, but it’s depressing just the same.  Because of other patients (who apparently are less cooperative and grateful for services than we are), the CAN has had to shift our time slot to 7:30 in the morning.  Because that makes us her first patient (as well as she now has more), she will no longer have time to sit and chat a bit.  I had enjoyed that.  Now it just feels like we’re forced to start our day super early … and then a long empty day stretching out with nothing at all to break it up or look forward to.

Last night, as I mentioned above, TGF picked up a couple of refills.  Today I have to call the pharmacy to see how they have stuff listed in their computer .. because they refilled something he didn’t really need yet; but did not refill one he’s completely out of.  It’s an iron pill, not one that’s “critical”; but that’s not the point.  In any case, I won’t be able to refill it now until Sunday.  The trouble with that is that the dialysis nurse comes on Friday to draw blood for labs, for an appointment next week.  And it’s going to show his iron low, and they’re going to yammer about I should be doing this and that .. and no one really cares that the base problem is my being stranded at home.

I have 5 or 6 bags of trash piled up in the dining room.  I despise having it there.  Any time anyone does enter the house,instead of seeing the pretty table I’ve set or the room being neat and attractive, the immediate view is piles of trash bags.  It just ruins everything … but DSS  just doesn’t care.  It’s too much trouble to get any trash that he doesn’t practically trip over. 

When DH bought the “stupidboat” (and that’s exactly how I’ve always thought of it), he also bought some fiberglass to refinish it.  He got a really good deal at the time, so rented a storage unit to keep it n.  Thanks to the arsonist last fall, the boat no longer exists.  And the stuff is now so old, it may or may not be any good.  But the unit keeps being rented right along.  I think DSS/TGF have added things, a lot from the shop while it’s being repaired.  But .. it’s still in DH’s name, and I agreed to continue to pay the rent for 6 months (after the fire).  This is the 6^th month.  I gave TGF the $$ to pay it at the beginning of the month.  But in the mail is a postcard reminder of rent due.  That just makes me furious.  I’m going to call the place, and tell them  DH is no longer responsible for that unit.  If that’s not “good enough” (they’re exceptionally nice, but do have to run a business), then I will tell them they are welcome to cut the lock off and put their own on it, and hold it hostage until DSS pays the rent … or get rid of it’s contents in any way they see fit.  I’m sick of being responsible for someone else’s problems.

On to of everything else, I’m very concerned about someone I love dearly, and have not heard from with an update.  I worry.  It’s what I do.

It will soon be time for DH’s morning pills.  After that, I’m going to try very hard to get a nap before getting a shower and starting the day.  I know I will need to come up with a new “routine” to accommodate the schedule change.  But it won’t happen today.  

Day 270

Day 270

Monday, February 17, 2014

Physical:

For the last few days DH has been in the care of DS and DIL while I “escaped”.  He did very well with them.  His confusion continues, but was not too “off the wall”; and he was not agitated or upset about anything.  He even seems to have moments of realization that things aren’t as they seem to him. 

He ate well, slept well, and things in general were very calm and relazed.  I believe he enjoyed the company for the weekend (instead of just me most of the time!)

People:

There were a lot of people in and out.  My brother and SIL came Friday, and brought me home again today.  TGF was here Friday until DIL got here.  2 of the grands were here, and 3 dogs.  I’m sure that was exciting! LOL!  The nurse came Friday before I left; but the CAN was out sick, and a replacement came sometime in the afternoon after I left.  TGF came by over the weekend; I have no idea if DSS came by or not.  Right when DB & SIL brought me home, and we were talking with DIL before she had to leave, the supply delivery came.  Less than 2 hours after everyone left, the CAN got here. 

Emotions:

I am, currently, relaxed and rested.  I know I’ll be tired again; but I really feel better able to handle the strees now.  Standing back a bit, so to seak, has given me some ideas about changes I can make; TGF also gave me a good idea.  So over the next few months I will gradually be doing some things to make life easier for me, and things run more smoothly for DH.

I think, also, I’m closer to accepting several situations that I can’t change, and figuring out realistic wasy to deal with them. 

Tomorrow (well, really, tonight) everything will be back to as close to “normal” as it gets around here.

Day 266

Day 266

Thursday, February 13, 2014

Physical:

This was another wakeful day for DH.  He slept most of the night – again, not “well”, but didn’t wake up disoriented.  He wanted to get up fairly early, but dozed off and on all day.  Late in the afternoonI had to take him back and let him lay on the bed awhile, and get him cleaned up; but he then went back to his chair to eat supper and watch TV until bedrime.   Every once in a while he would ask me a question or just make a comment that (to me) made no sense.

People:

I talked to several people on the phone off and on during the day.  No one, of course, came to the house.

Emotions:

What a nerve wracking day it was!  We were originally forecasted to have several inches more snow.  As the day went by it became clear that the system moved more to the north than expected; so in the end, we really didn’t get any more snow.   I didn’t know until late in the day what conditions were like to the west or east; so I really felt in limbo over whether I would get to go off for the weekend or not.  By late in the evening it seemed like everything pretty much fell into place.  Thee is one small “glitch”  .. but just something someone else will have to deal with.  I am determined not to worry about it (but will take what steps I can as precautions before I leave)

It’s encouraging that DH is aware I’m going off for a few days, and is OK with it.  It’s strange how he can remember that; and yet can’t “remember” that he can’t get up and walk.    It’s depressing to have to tell him simple things every day; and he rarely really knows where he is.  But he seems to remember if someone is coming over, especially if it’s family. 

I really hope the sleeping pills come today (Friday).  Not so much to help him sleep .. he still does a lot of that.  But they help his brain calm down so he sleeps better.

Day 265

Day 265

Wednesday, February 12, 2014

Physical:

I managed to persuade DH for most of the day the best place for him was in bed, the warmest place in the house.  It really was; this old house is drafty and full of cold spots.  He woke fairly early, but stayed in bed with the TV on .. up to around 5:00.  Then he flipped those covers off, and insisted he was going to get up.  So, I went on and got him up; at least that made it easier to go in and set up dialysis.  He was up less than 3 hours, but ready to go back to bed by his “usual” 8:00 (after “Big Bang”).  He did not fall asleep as quickly as he usually does, but slept through once he did.  Again, his breathing seemed to be irratic and at times he sounded like he was gasping; but he either didn’t wake up, or went on back to sleep.

He is still sleeping (just shy of 6:00 AM Thursday), but still uneven so don’t know when he’ll wake.

People:

Early in the morning both the CAN and the nurse called . those were mainly “official” calls to say no one was coming and make sure we were OK.  I pretty much knew they wouldn’t be coming!  I did let the nurse know about the missing medicine.  She followed up and called me back .. turns out  the pharmacy claimed it was never ordered (which was NOT true, she ordered it right in front of us).  So it won’t get here until Friday.

During the afternoon DH’s sister, and a girlfriend called to check on us and conditions here.

Fairly late in the evening DSS, and a bit later TGF, called to see how things are and let us know how they’re doing.  The school out days have finally gotten to be too much (combined with the cold).  Kids are bored!

Emotions:

I’m exhausted from emotional upheaval!  All day I watched (listened) to the TV.  The local station stayed on storm coverage the entire day.  Snow came down hard and fast during the morning.  By early afternoon it changed to sleet and icy rain.  By not long after dark, it pretty much stopped.  Despite their dire predictions, our power did not go off (though more is coming)

Listening to the TV this morning seems it was not quite as bad as feared.  There was a lot more rain than expected, as opposed to sleet/ice.  They’re still saying more snow today, so the possibility of my weekend is still very much upp in the air   Since there’s absolutely nothing I can do about it, I’m going on as best I can to count on the best but be prepared for the worst.   Because of the weather, a lot of the plans for today have been changed.  As usual, I have a very hard time dealing with that. 

This morning I woke around 5:00.  I’m surprised I slet as well as I did .. I was weighed down by  a double fleece blanket, heavy quilt, and a cat.  The wind must have eased off some, because the house is not as cold as it was last night.  But because I wanted to be prepared in case of no power, I’ve already done all the things I would normally do this early. 

One good thing about yesterday’s freaky weather is that it kept me so much on edge that I didn’t have enough left over emotional energy to feel depressed.  I don’t recommend this!

Day 264

Day 264

Tuesday, February 11, 2014

Physical:

Despite the poor night before, Tuesday was not too bad a day.  After his very early bath, DH slept until just a bit before noon.  I had thought he might sleep longer; and once up, I expected he’d sleep more in his chair.  But he didn’t.  And he did sleep through last night, although by the sound of his breathing, it was not a totally restful night.

Now comes the question:  does the sleeping pill do too much?  And which way is he better off:  sleeping so much of the time, or being awake and tired and agitated, not knowing where he is.  I have been vaguely concerned abut how much time he spends sleeping (the nurse continues to tell me it’s completely normal, his body is simply slowing down).  But if staying awake more means he’s more confused and disoriented, and more unhappy about it (mostly because I can’t take him where he wants to be), is that better?

He ate about the same as usual, a sandwich for lunch (didn’t finish that); and oven fried chicken, which he did eat well.  He ate 3 (small) pieces of chicken, and some grappes.

People:

The CAN came early, and didn’t tarry as she needed to get to all of her customers before the roads got bad (which they didn’t, but no way of knowing that ahead of time).  I talked to my brother on the phone.  The nurse called, but just to make sure all was OK, as she likely won’t be here until Friday.  Surprisingly,  (or not), neither DSS nor TGF got in touch with us at all.

Emotions:

I have waited years .. maybe all my life … for a really good snowy winter.  Well, they always say be careful what you wish for.  I turned on the TV as soon as I got u .. and haven’t stopped being weepy since.  I know I’m being overly pessimistic at this point, and I’m trying not to be. 

As of this morning the forecast is for more snow (on top of around 4 to 5 inches yesterday), probably within the next hour or two.  It will snow most of the day – another couple of inches maybe.  But at some point late in the day it will turn to sleet and ice.  That would be the worst possible thing .. it will cause roads to be dangerous, and will surely cause power outages.  Theree is a very small possibility of getting only rain, which  would of course be a good thing.  It would still cause icey roads, but without the ice build up on power lines.   The part that’s really getting to me is that for the first time it was said there would be yet another storm (or piece of this one, who knows) come through late Thursday; and the highs for Friday have been lowered.  They’re still in the 40s, and with sun (finally) … IF that happens … the roads should quickly clear. 

A guy on the news just “explained” why this weather is so crazy.  It’s because (1) the north pole is melting; and (2) the jet stream is erratic.  He was a physics professor.  That makes me think of Sheldon.  That makes me not take him seriously.

Since DH had a better night (at least no waking up with his mind in another dimention), I had a more restful one.  I woke up several times, but didn’t have to get up.  The irony is that I’ve slept bettr in a less comfortable chair .. but I think that might be at least in part because the den is just not getting warm enough.  I don’t like to sleep in too much heat, but some.  Cold air creeps in around the windows (and is really bad when it’s windy) and counteracts the heat.

The sleeping pills never came, so now I have very little hope of them getting here before Friday.  I guess we’ll see how he does without them for several days.

I’m going to try to push myself to get done the things on today’s list, as well as finish things uncompleted earlier this week.  It’s hard when it’s cold (the kitchen is Cold, as is the back hall.  The den isn’t very warm).  I have to make sure to have laundry caught up,  and anything else I can do to be prepared just in case of power going out.  But I’m also going to call the electric company and make sure they’re aware of a house with a patient on oxygen and dialysis.  (technically the dialysis *could* be done manually – but we don’t have enough solution on hand to do enough exchanges; plus, the solution needs to be kept warm, and that also can’t be done without electric).   I have to do anything I can to keep busy and not get more worried about the weekend.  What will happen is beyond my control  … but if the weather cancels my weekend, it will likely be months before there’s another window of opportunity.  Maybe many many months.

The news this morning is saying Atlanta has already been hit with treacherous ice, and calling this a “major disaster”.  It makes me wonder how they can be calling for snow here most of the day before changing to the ice or rain.  But then, I’m no scientist, and couldn’t begin to understand all this stuff.   I’m just waiting for snow, hoping (shocking) for rain, and trying very hard not to let myself get discouraged.

Day 253

Day 263

Monday, February 10, 2014

Physical:

This was not too bad a day in most ways.  DH kept waking up and then going on back to sleep (He would say he was still drowsy).  He didn’t decide he was ready to get up until around 2:30.  Once up, he did stay mostly awake all afternoon.    He didn’t eat well – refused anything until I gave him some hamburger helper in the evening.  But of course, he did eat a small bowl of sherbert.

He was mildly confused, as always; but not upset about where he thought he was; and not argumentative.

People:

Since the CAN had car trouble, she didn’t get here and I decided against anyone else.  I hope that wasn’t a mistake.  In the late afternoon DSS came by.  He did pick up all of the trash; but it was too late to take it to the dump.  On the other hand, there’s no school today, so he can take it on his way to work.

Emotions:

The Rx for sleeping pills was not delivered yesterday as it was supposed to have been.  I hoped that as much as DH seems to sleep, maybe it would be OK.  It was not!  I think the trouble is not so much the sleeping .. but when he doesn’t sleep at night, his mind is much worse.  At 2:00 AM, when the idiot cat decided it was time to get out of the closet she’d snuck into for a nap, I checked on him  .. he claimed he hadn’t been to sleep (but I had heard him snoring).  Around 4:00 AM he started with the throwing the covers off and wanting to get up.  From there on  I had to go into his room repeatedly … maybe as long as an hour, maybe only 5 minutes between times.  I have to admit, I got extremely upset … tired will do that to me.  He was convinced he was at the chemical plant he worked at (around 30 or so years ago).  He couldn’t find his clothes.  He couldn’t find his pistol.   He couldn’t find the car keys.  I don’t even remember what else.  I couldn’t “go along” with him, but tried to convince him everything could wait until daylight.  Nothing worked.  I guess I could have tried the gel .. but he wasn’t exactly “agitated” (I was!!), just determined that what he “saw” was truth and not anything I said.  All in all, it was a totally bad night.  I’m exhausted, headachy and grumpy.  I had thought to get u early (but NOT 4:00!) and get some things done, since morning is usually when I have the most time and energy.   I will have to revise my plans for the week.  In any case, according to the weather on TV this morning (Tuesday), it could start snowing any minute and we could get several inches .. and that’s before the “big” storm tomorrow which could bring snow and ice.   I am trying to stay positive; but I am SO afraid of the roads not being clear by Friday .. from here to the coast and also from here to the western part of the state.

The CAN is coming very early this morning.  Because of the weather threat (it’s nearly 9:00 and despite forecasts, not a drop of snow has fallen here) she’s going to start at the south end of her route .. here.

I don’t know if I’ll get anything done today.  It’s been a long time since we’ve had such a bad night.  Apparently the sleeping pills really make a lot of difference.  I’ll have to see how well he does today though … I don’t think the pills making him sleep 15 to 20 hours is a good thing.

One part of me hopes the weekend goes off with no problems.  But there is a tiny mean part of me that hopes someone else will get a taste of what I put up with.  Everyone usually sees DH at his best .. only just a little confursed maybe.  They really don’t know!!!

Day 262

Day 262

Sunday February 9 2014

Physical:

It was a fairly good day in that I got DH moved to and from his chair without mishap.  I’m not saying it was easy, but there were no “close calls”.  His mind was, apparently, at Wal-Mart most of the day.  He kept asking about the “other car”, and got quite annoyed with me if I tried to say there wasn’t another car.

He did, as usual, sleep most of the day.  I guess that’s saying his chair is reasonably comfortable.  Maybe.  But the fact is, more often than not  he sleeps 80% or more.

He ate about the same as usual, a sandwich for lunch and a pot pie for supper.  I believe he really has no appetite, and will only eat enough of what I give him to “get by”.  He used to be able to eat a couple of sandwiches, and at least 2 pot pies.  However, he still has a bit of a sweet tooth, and gladly accepted a small bowl of sherbert and a very small piece of cake.

People:

TGF and the boys stopped by with some additional groceries.  DSS didn’t come, with a very flimsy excuse.  He did call later, and I let him know his dad was disappointed.  He said he’ll come this afternoon (Monday).

Emotions:

Last night I had an exceptionally good night.  I barely managed to stay awake to watch the Beattles tribute show; and though I was vagely wakeful once or twice, I didn’t really wake up until close to 6:30.  And yet, this morning I’m very weepy.  I believe it’s a combination of things:  left over nostalgia from the show last night;  worry about another predicted winter storm – the kind that does impact my area – and it’s potential effect on the weekend; and throw in that DH is wakeful and his mind is way out of here.  In a short time, when I took in an early pill, he said so many contradictory things that I can’t even tell what’s going on in his mind.  I can tell him he’s home, and he says OK .. but within minutes, he’s somewhere else.  He made the comment that his mind was like a spinning top and he couldn’t tell where it was going to stop.

The weather forecast continues to say the storm will be gone by Friday and the temps will be in the 50s.  I will cling to the hope that a sloppy mid week will not threaten my weekend off.  I now have 4 days to wait, and have plans to stay busy and get the house clean before going. 

There will be no CAN today. (Monday)  This could turn into a bit of a lonely week.  She had car trouble; when they called I said I didn’t think the need was enough to justify scrabling someone else’s schedule to send a CAN out today.  With bad weather moving in there’s no telling who will or won’t be able to get here the rest of the week.

Day 261

Day 261

Saturday February 8 2014

Physical:

Saturday was a very oddly quiet day.  DH stayed in bed all day.  Around mid afternoon he would have liked to get up; but he didn’t press the issue.  I told him that after the near disaster Friday night, he and I both needed a rest day.  I doubt he remembered or understood what I was saying, but he didn’t argue the point.

He kept saying he wasn’t hungry; but I did persuade him to eat a sandwich in the early afternoon, and then a pot pie.  Oh, and he did get a bowl of ice cream in late afternoon.

Surprisingly, he actually stayed awake most of the afternoon.  He had his TV on, and was changing the channel occasionally – and actually managed to find things to watch.

He slept well, but is wakeful early this morning (Sunday), and full of questions about where he is.  It’s weird how he understands that his mind is playing tricks on him; and yet at the same time, whatever he thinks he sees is completely real to him.

People:

The only people here was TGF and her youngest.  She brought groceries, and helped with the mail.  (she won’t be here today Sunday, so I won’t get out of the house this week).

Emotions:

Right now my biggest concern is the physically getting DH up and down.  Friday night was such a fiasco, now I’m terrified of trying.  He sort of understands; but it’s also something he really has no control over.  It’s like there’s actually some strength in his legs; but the brain refuses to send the message to them to stand up.  So he “sags”.   He seems to know it, but can’t control it.  But that doesn’t change the basic fact:  it’s up to me, by myself, 90% of the time, to get him out of bed and into the wheelchair; and out of the wheelchair and into the chair; and out of the lift chair and into the wheelchair; and out of the wheelchair and back on the bed.  That is a LOT of moving, even for him to only be up once a day.  And that is 4 different opportunities for a bad fall .. for him and for me.

I spent yesterday being strangely restless.  Part of it was just waiting for TGF to get here with the groceries .. expected her in the morning, but she didn’t come until mid afternoon.  But, she also picked up med refills.  Unfortunately, I didn’t discover until the evening that I had no milk.  She said she got it .. but it never made it to my fridge.  Hmmm … wonder where it is??  But she was going to go pick up a few more things (some chicken on sale, some nutrition drink), so she’ll get the milk.  DSS will bring the things to me this afternoon.

It’s 5 days to my “vacation”.  I planned it out so that the closer it gets, the busier I get.  Someone asked me Friday if I was packed yet.  Well of course not, that would be silly.  My clothes would be all wrinkled .. they’re chosen and hanging together to be packed later! LOL!

I keep losing my train of thought.  DH is not sleeping very well into the morning.  He sleeps, but keeps waking up and calling me .. first he was “in Wal-Mart”; then the “car won’t start”; and then to tell me about the giant spider, right there under the porch.   I am putting off getting him up until close to noon, so that he can (hopefully) stay up until bedtime without thinking he *has* to go lay down and take a nap.  He has been mostly pretty good about just leaning the chair back (though recently he’s insisted on having a cap over his eyes).  I can’t really make him understand that I have to limit the number of times I have to move him; but he seems to somewhat grasp the concept of not being too tired when DSS is here (later this afternoon).  I think this might be a Llllllllng day.  

Day 260

Day 260

Friday February 7 2014

Physical:

This was not at all a good day.  Well, the beginning and end of it were awful.  In th morning, just minutes after I’d checked and DH was sleeping peacefully, I heard him “rattling” around.  When I went back, he had thrown off the covers.  When asked why, he announced he was getting up.  I think this might be the one thing that is becoming worse and the most difficult for me to deal with:  his complete inability to realize that he can’t just get up and do what he thinks he can. 

I went on and got him up, and within minutes he was asleep in his chair.  I tried to wake him up to eat lunch – grilled cheese sandwiches, something he usually asks for more of.  He could barely stay awake to eat what I gave him.

It was very late afternoon – close to 4:00 – before the CAN got here.  She did a “quickie” wash up, and she brought supplies.  It was a small struggle even for the 2 of us to get him to bed and back up again.  And he went right back to sleep.  I woke him up part way through the news, so hopefully it wouldn’t keep him from sleeping at night.  I made another salad for supper, as we’d both enjoyed that.  He ate it .. mostly … but it took him over 2 hours.

At 8:00, when I usually get him to bed, what he thought was a new program came on that he wanted to watch.  It turned out it was a movie and didn’t end until 10:00.  But by 9:00 he was ready to give up.  But, when I tried to get him out of his chair, I couldn’t do it.  He was completely limp – was barely even holding on with his arms around  my neck.  I don’t know if he was just too tired or what.  But try as I might, I couldn’t get him up and into the wheelchair.  At one point it was a close call, and I barely got him back to the chair.  He cannot stop putting his left arm back and grabbing the arm of the wheelchair.  I cannot convince him that (1) it’s making his torso turn in the opposite direction from what I need and (2)  he’s actually pushing the wheelchair away.  It nearly folded up this time; and he kept sagging like he was going to sit whether there was something under him or not.  He was so far down on the lift chair that it nearly tipped forward; so I had to pull him from behind to get a little higher up in the chair.  That wasn’t very successful, but got him far enough for the chair to stop tipping over.  In the end .. at 9:30 at night .. I had to give up and call DSS.  I hated to do that, but by then there just wasn’t any choice (well, except call EMT).  Even with his help, it was a struggle.  This totally scares me – it seems to be happening more frequently, and I can’t handle it.  I can’t keep having to call DSS, especially so late at night.

After all of that, he did go on to sleep; and slept through the night.  He didn’t even cough a lot .. but he didn’t sleep well.  This morning his breathing is harsher off and on.

He woke early and I went on and took him his early pill this morning (Saturday).  He told me he’d been to the aquarium store last night. Usually when he thinks he’s been somewhere he’s “tired” enough to sleeplate.  He’s still restless; but getting up early is not an option, since the dialysis got started so late.  I’m hoping he will go on back to sleep soon.  I don’t know if I’ll be able to get him up today or not.

People:

The CAN came late in the day (she’d had extra patients given to her).  TGF came later to pick up something she’d left here, and get a grocery list.  She will do my shopping for me today; and she will pick u med refills and DSS will bring them tomorrow.  I don’t get to leave the house at all this week … but she seems to think that since I get a weekend off it’s fine to not get out this week.  Whatever. 

Then of course, had to call DSS.  He and TGF came by, but only long enough to help get DH into the wheelchair, and then into bed.

Emotions:

I was extremely upset last night of course.  It was borderline panic when I could not get DH up … he just couldn’t do what he needed to do.  I didn’t want to have to call anyone that late.  And of course, when DSS got here, he was able to lift DH and get him into the wheelchair with relatively little trouble.  Which makes me look highly incompetent.  And yet, he doesn’t try to come up with any solution to this problem.  I know he is adamantly – even more so than me – against putting DH in a facility.  So he needs to figure a way for them to help me out a lot more than they are.  I know DS (to some degree – he’s been working 10 hour days) and DIL would willingly help more if they lived closer.  Moving closer to them is not an option – we couldn’t afford anything there.  And moving closer to DSS is not an option either; not only could we not afford it,  I’d have a very hard time dealing with the town politics.  (and minding your own business isn’t an option, because everyone else tries to mind it for you).  I know there are people who try to help out.  But no one really grasps what it’s like 24/7.  Just like last night .. here alone late in the evening and unable to get him to bed.   Or trying to convince him he’s in a bed and not in a car and it’s OK to go to sleep – long before daylight.

It’s 6 more days until I get a break.  I am SO looking forward to that.  I know I’ll worry about how well DIL and DS and the kids will cope with DH.  The lifting part at least, shouldn’t be an issue … DS won’t have any trouble.  He moves things like refrigerators just to show off.  Plus DGS will be able to help to a point.  I do worry how they’ll cope with things like getting him dressed (and changing diapers); and finding the right balance between going along with his fantasy and telling him what’s going on in “real time”.  I’m concerned about the dialysis but there just isn’t a chance to go over it.  I have written out instructions the best I can.  I hope DH’s sister will take instructions this week; but I’m afraid she’ll be too sick to do it, so DIL really has no “back up” at all, other than calling me or calling the 800 number for the cycler company.

DH also has a habit that can be very disconcerting.  He seems to know he does it, but not why … he tends to hold his breath.  It makes it sound like he’s struggling to do something (like get out of bed).  So I have to keep checking. 

This morning (Saturday) is gray and chilly (though not freezing).  DH is very restless and can’t seem to get back to sleep.   My knees and thumbs are hurting.  I will definitely have to find something to do to keep busy!